I am not saying anything about his alleged victims. I am not saying whether he was or was not a man stunted in childhood and wishing for what he didn’t have, but showing it the wrong way. I’m not saying whether he’s innocent or guilty. Only God knows…
What I know is that many of his songs were my life. What I know is that when my high school friend and I made up dances to his songs and I was told to take up dance professionally, I felt seen. I was not a no good.
One Voice Children’s Choir did a cover of this song so it popped up in my music app as a new release. Of course I listened. And it too brought me to tears just like the 1993 original has ever done.
From the beginning, from the day this song came out, my heart felt it. I don’t know who the writer is. But they were speaking my soul. I wanted to be loved, held. I loved the little one doing sign language. It was everything- y’all know I wanted to adopt since I was 10 years old. I wanted to imagine having a loving mother and brother. And this particular concert, where the ‘angel’ comes down?? It always made me bawl too. I wanted, yearned for someone to hold me. I mostly used to recover from surgery alone at home. Nothing as lonely as not being held when in extreme pain. I was reminded of this song last week because a young girl was asking her mom to stay home with her and the mom was loudly telling her that her family responsibility leave is over and she should be grateful that at least she took her to the doctor. There was no, “I’m sorry, I do want to take care of you.” That’s what killed me. It was like the poor child was asking for something she should not have been asking for- being a pest.
I was that little girl at the Clicks pharmacy. It hurts. Lonelienss while in the company of those who outsiders think is caring is a painful kind of loneliness.
The most heartrending lines are “But I’m only human” and “I get lonely sometimes…” Even in 1993 they broke my heart. I wished I could protect from his money grubbing parents. But I wished I could protect myself too.
I get lonely sometimes.
I’m not a super anything, I’m only human. And oh, I want to be held.
Thank you, One Voice Children’s Choir for reminding me of this song and making me go search for it. My God will come with ten thousands of His angels. Real angels. And they will hold me and every heartache will disappear. Every betrayal forgotten. Every wound healed. My body and my heart will be like His- perfect.
Until then, every now and then when I need to let out my emotions and cry, I will listen to this song. (Sorry to those who are offended by some of the dressing or dance moves. He wasn’t a holy roller SDA. But his songs touched this heart of mine.)
No, not you, very kind and talkative Nurse Malinga, the Zulu nurse who asked me where I’m from and apologised profusely for not being able to get the cannula in for my drip. Not you who was ignored by the Hand Nurse when you asked if it was time to handover so you could go home long after most night shift nurses had left. I mean you, Hand Nurse.
Just a few days before my hospital trip this past Friday morning I’d been singing the praises of nurses because of how wonderful the nurses at Intercare had been when my 17 year old daughter needed a drip. I regretted being so effusive when you didn’t make eye contact with your colleague nor animate anything she said.. and not with me, your patient. I felt so embarrassed for her. Why didn’t you say anything as she handed over, giving you all my information and asking if she may be dismissed?
You just came in, looked for a vein on the side of my hand and got that needle in. No greeting, evens guard had ambled over to me when I parked, coming from far away to ask if I needed a wheelchair yet no greeting from you. No mention of how you wish you didn’t need to use my arm, no words at all. You just took my hand like it’s a piece of furniture and did what you had to do.
You did everything you had to do. Without ever looking at me. You didn’t even look at me when you brought me the extra blanket when I was oh so cold and miserable. I was so shocked that I was unable to ask you to change the position of the bed. I was miserable. So miserable that the only thing that kept the final drip in my hand was the knowledge that I needed it and if I left, I’d be in trouble. I wanted to die. That was the only the second time I’ve ever spent time in a hospital wanting to die, and the first time, the nurses were wonderful. They smiled, asked how to make me comfortable…
I offered you-mentally, because we never spoke-grace. Perhaps you felt ill but needed to come in and see how the illness progressed because you needed the money. You did keep coughing after all, making new feet I’d leave the hospital with a killer respiratory infection. Perhaps your cat was sick. I made up reasons why you didn’t see me, you saw my hand.
I hope today you don’t have any reason not to see the patient lying in the bed in misery. All alone.
Sincerely,
The patient who still thanked you anyway for caring for her even though she didn’t feel cared for, just treated as a duty.
It was just before evening worship. My eldest daughter was sick and would be sick the following day too (today.) Yesterday as we tried to take care of everyone, my son asked, “How will you survive if I leave?? There’s too much to do! They are too much for you on your own!”
I don’t know. I don’t have (with regards to maturity) an eight and nine year old. They are all four years olds, or even three years old given my not very talkative four year old is intellectually impaired. And in fact, my very talkative four year old is already a bit wiser than the eight and nine year old. If the nine year old is watching one twin, it doesn’t mean that twin is safe. You have to make sure there sure suit eyes everywhere. After all, my nine year old and eight test old still do dangerous things.
Another reason they’re not at a helpful age. Leg me start from the beginning. My Micaiah, (eight years old) threw up on Sunday evening. He then had diarrhea but not often. My eldest daughter got sick yesterday. Nausea, vomiting, fever, abdominal pain. If she tried to sip, she’d vomit. The night brought no relief so I took her to the doctor.
Time for IV. He suspects coronavirus, influenza A or.. something. She’s still down and very out.
So this led to my not very talkative twin vomiting at home! Started this morning! I dumped one child at the medical centre after they started the drip, asked the paed for a script of Zofer (Zofran) for my for year old which they emailed through. Collected the medication so my poor angel could finally lose the nausea and vomiting and be able to sip her drink and eat! And that vomiting was when I realised how different my children are. Both the eight year old and nine year old were terrified when their little sister threw up at the table! They ran away, grabbing their bowls. Scared! My poor Mickey was even whimpering in fear! It was left to my very talkative four year old to ask to help me and biggest brother wipe up the mess. ❤️
Truly, how will I survive on my own when I’m barely surviving as it is? My body is breaking down, today no amount of pain meds reduced the bone pain… I’m tired.
I don’t know. But I also didn’t know how I’d survive those terrible twin baby years yet I did. It will all come together-somehow.
So, my daughter has been spiraling. The Paed needed to see her as it really has been a long time and this wasn’t going to be a matter of increasing her dose of current meds as they’ve increased her appetite dramatically and half the screaming sessions are because we can’t let her eat multiple times when she’s just eaten.
This is the only time she was calm-when she was looking at trees painted in the reception area. Other than that, she was in so much distress that in the elevator going up, as woman had to end her call. She pulled me away from the door to enter the reception, pulling HARD. S dad even wished me good luck as he walked out after seeing me physically carrying her in.
I wished I could run out with her. But she needs help. It’s obvious her meds aren’t helping anymore. She was agitated and kept wanting to go during our doctor’s visit. This all by a child who has been there many times and was happily bouncing on the sofa and cried when it was time to leave, not wanting to. This was a new child. A terrified child. A child who scrabbled at the closed elevator doors as we went down, desperately wanting to get out. A hild who screamed in the hospital as we left, guaranteeing all eyes on us.
Next time I’ll ask if we can do video call. This was horrific.
But also, my girl calmed down as soon as she was able to touch bushes planted outside. Trees. Plants comfort her. Centre her. Give her peace. I didn’t realise how deep it was till I told her teen siblings and my 17 year old daughter told me that she sometimes will take a whole walk these days(She’s been refusing. Or stopping and returning when she used to be the one to pull them to go out🥹)if they tear down a small branch with leaves from our tree. THEN she’s happier off walking holding it.
Her favorite toy is a new one I bought that has fake carrots with lots of greenery. Now I see why she screamed for it at night. She never asks for anything but her teddy, usually. I need to somehow make use of this knowledge for her bedroom. To make it feel like her safe space. She wants to sleep holding jellyfish lamps and the water pours out no matter how tightly we close it, so that is a sensory no for her room. Hmmm
But I can’t leave on that sad note, thinking of our disastrous hospital visit where the receptionist said, “Oh my, she’s a full time job!”
She said pizza this weekend!! She’d first said “Noodles” as she looked at my pizza. I said, “Hmm, is that what you think?” And then suddenly moments later, she yelled “PIZZA!” First time ever! I think she had been telling herself she needs to find the right word. So we shared my last slice. Ok, she reached for it and I told her we’d share. A bite for me, a bite for her…
And she asked “What’s that?” When looking at a new and different kind of puzzle. We might not be holding conversations or answering questions, but every new form of communication that pops up is a cause for celebration! Hoping for better times. Thankful the good ones already existing.
I don’t want to say “Dear mom,” because I’ve seen many caregivers of both genders. I’ve seen very dedicated dads, and extremely protective grannies. Remember how the autism workshop I attended had many grandmothers there, wanting to help their autistic grandchildren? So no, this is not a dear mom letter, it’s a letter for all those who love and care for autistic angels.
You are shocked. You are shook. You suspected but hoped for the best. You know that disability makes life harder. That’s not the dream you had when you imagined being a parent. And let me be specific. I mean this letter to be for those who love children who aren’t able to express themselves clearly. It’s for those society misunderstands or looks down on the most. The ones people assume can’t reason, can’t think. The ones some parts of society views purely as a burden.
My son was six months old when I confidently stated he was autistic. He wasn’t making eye contact, he didn’t babble in his two years. There was just silence. He hated touch. He hated life. It was just too overwhelming, those sounds, smells, lights and feelings on his skin…
But today he speaks, he more than babbles. He touches, he smells, he appreciates, he loves with his whole heart.
Or, what if you’re the mother of a child like my four year old? What if your baby did develop ‘normally?’ You definitely didn’t think anything could go wrong with his or her development after 18 months of bliss. They were meeting their milestones, smiling, hugging, giving baby kisses, interested in you and their surroundings, loving their siblings’ attention, reaching out to you, to them. Love was so evident.
Until they didn’t do any of that anymore. Silence filled the air. It was heavy and loud. The smiles disappeared and the kisses vanished. You no longer seemed to exist. Where was your baby? Where is your baby? Who is this current baby? You never imagined having a child that stops to feel the ground you’re walking on. You never thought your smiley baby would not look you in the eye. You never dreamt their smile would ever disappear. The bond she had with her siblings disappeared, as seen in my main photo where my angel turned her back on her twin sister when she went to sit with her. Will your old baby ever come back?
I don’t know. I can only tell you that she or he might yet surprise you. My child is not the little two year old who was diagnosed. She didn’t want us touching her. If her twin sat next to her, or tried to touch her, she pushed her away- hard. Her words disappeared. And then for months after the terrible silence, we only heard crying and songs, oh, she sang. But now at age four, she actually not only doesn’t push her twin away, she even pushes herself forward in the bath, making sure as much of her legs as possible are touching her twin’s legs.
She even goes out to play with her siblings. Something we never imagined her doing. No, she doesn’t play with them, but she seeks their company. They feel a connection they thought was lost for good.
I don’t have my old baby. This one is hard to handle. She has terrible sensory dysregulation. She can’t tell me why she’s miserable so often. I thought she would have stopped crying by now. But ..she’s not the baby that was developing typically. She can’t tell me what’s wrong. She breaks my heart more than a speaking baby would because I don’t know what she’s thinking, this one is a mystery most of the time. She’s not the baby I had and she won’t be.
Autism is forever. But so is my love.
And autism doesn’t stay looking the same as it did.
So comfort yourself with that. Your two year old, three year old, six year old is not the autistic they will become. There is always, always room for hope.
We went from no words, to words asking for cereal, milk, soya milk, grapes and ice lollies. For us, she’s reached PhD status level! And that’s the beauty. Appreciate who your baby is even when it’s hard, who they might become will then be a bonus. I didn’t need words to be spoken, I just wanted communication. Even nodding would have been ok. (Ok, I still would prefer nodding too so I know I’m on the right track when I have to guess what she wants. I have to be real!) We didn’t sleep for three years until she was medicated for her extreme moods. And it’s not plain sailing even now though things are better, don’t think I’m telling you THAT either.
We had a horrific doctor visit today in fact. But as she screamed and everyone turned to stare in that hospital reception area, I held my head up high.
This is my baby and I love her with all my heart. What matters most is not who she was, but how to help her be the happiest version of her current self she can be. And that meant (for us specifically) getting away from the automatic doors and lights and strangers today. Tomorrow, it will be a different battle. But we will fight it together.
And I see that same strength in you in your weakness when you come online wondering where to find a school for them. It’s the same weakness I have. I am desperate for help. I marched with Autism Western Cape, begging the government to help us. The strength is in your deep love. You’re not giving up even though it is so, so hopeless and so, so lonely.
May the fire of your love for your child keep burning strong and bright. Keep advocating. They might not show you they love you in the way you’d expect it hope for, or in any way at all, but they definitely need you. And that’s what parenting is about, isn’t it. Being what our children need. Autistic or not.
We bear each others’ burdens. My people know I worry about them just as much as they worry about me. We care equally for each other. I immerse myself in their problems and cheer for their victories. I love them deeply.
This angel above is in her 20’s in Malawi. Daughter of a church sister. Maybe two years ago she heard what I wasn’t hearing as I sent her a voice note and walked around my home. “Mom, why do you sound like you’ve been doing too much? You’re not breathing properly! Please stop! You need to rest!” That is love! She broke my heart recently when I asked her how she is, she answered vaguely if I remember correctly and then when I queried it, she said sadly, “Everybody I love is sick.” And that was before we knew my lungs were deteriorating. Her mother has a chronic leukemia that usually patients have to take lifelong chemo tablets for. Her close friend has heart problems. Major ones.
It was the fact that she picked up the breathlessness. And how I stupidly thought maybe it’s from walking too fast around the house.🤦🏾♀️
It’s this friend
She told me to stop an exercise by Juice and Toya because during the video as I spoke, I started coughing and became breathless. She told me to obey m the pulmonologist who had told me walking 3 times a week is ENOUGH exercise for me. (He didn’t know I cough and splutter for that workout. I need to try and talk for all my supposedly low impact workouts from now on. I hadn’t thought to try them all while talking to myself. I thought as long as I don’t cough it’s ok. There’s one I dumped because I became way too breathless and tired even without talking. I thought that should be my criteria) She said it out of concern as she watched, not knowing that it’s actually true advice from experts too.
As I said, we all share our problems. Life is not perfect and will never be perfect on this earth. Every day brings challenges we overcome, screaming children we try work with, another day with no job interview, heartbreak over children in their ministry who are neglected… But it seems sometimes, that love is one- sided.
I shared once how my husband was bemused and slightly disapproving that I was doing housework late at night. After all, I had been caring for our family of eight during the day too. And we knew I had AS. Some commented that they too also work till at night.
I reminded them that the context was that AS patients should be resting and not working all day and night. One lady totally got it. The other very healthy, younger, less than three children who sometimes go to relatives so she gets to rest from parenting (If I said how few children she has, people might recognise her so I won’t) told me, “Don’t forget, we also get tired.”
That was when I realised that I bore her burdens, but she had no desire to take in anything I’d said. We AS warriors and others with chronic issues (especially us without treatment yet) wake up alreadytired! It only gets worse during the day. And now I know too that my lung deteriorating means my the lack of enough oxygen reaching my blood which also causes fatigue. Again, I begin the day tired. I just wanted to be grateful that despite my problems, I’d worked too much more than usual and was happy that the day wasn’t as bad as usual. Why can’t we rejoice for each other? Your A might be better than my A if you’d always been a D student and I’d ever been an A student! It’s not the A, it’s you doing phenomenally for YOU. I celebrate that for my people. And my people celebrate it for me. My true friend above even said that she knows that if I were well, I’d do even more. THAT meant a lot. This stupid disease is holding us back a lot. (As do many other diseases!💔)
I had a bad night. Woke up and emailed my rheumatologist about pain relief-the joint injections and if there’s anything we can do my shoulder and elbow. My chest has been weird and I coughed a lot. We are given sleeping tablets that also allegedly reduce some pain so that we can sleep through the AS pain at night but nope, it’s been no match for the shoulder, elbow and last night, SI joint pain. And so, my posts will reflect that. It’s not all sunshine and roses. Finally gave up trying to sleep at 3am. We wake up tired not only from the disease, but from pain-filled nights. And we gotta keep parenting and working. And that’s ok. Everyone has trials. This is my blog, and my trial.😅
I’m still grateful that my little ones miss the struggle. My very talkative four year old asks to sit on my lap for story time. It HURTS even more. But I do it anyway. (Though I try avoid it happening daily.)
Today, I just wanted to thank those who were worried before I realised I really did have something to worry about. The ones who worry today-not only about me, but about all the challenges each of my children have. Who wonder with me who can solve each problem…Like one child (not the four year olds) with a terribly leaking bladder who doesn’t want to wear a pull up but is causing the bed for lots of washing as the ammonia smell is strong on clothing worn. I need to share that. It felt great to see a post on lack of bladder control by an aunt and to see other aunts agreeing that they too can’t control their bladder for various reasons and felt validated. I want to validate any mother in that situation. Not forgetting my shirt size angel who has outgrown baby diapers and is nowhere close to being potty trained. I see parents in my special needs groups having to buy size small adult diapers for their children, teens. We’re in this together, parent, I appreciate you. This road would be harder without you.
My nine year old, Ammy, saw me last week taking my injection out the fridge. She even expressed surprise that I was doing it myself. All along, she thought I was going to a doctor to inject me.
I hadn’t even meant for it to be a big production. But I’d had an appointment earlier on so didn’t take it out to warm it up at my usual time. Yes, my older children see it in the fridge when they take stuff out, but it’s not in their faces. (I hope.) I doubt they look inside and think, “ Oh yes, Mom has an incurable disabling disease, this should hopefully slow it down.”
So I was startled and amused when yesterday, Ammy asked, “Mom, is your ankysauraus spondylitis gone now?” I giggled inside at the name, and told her seriously, “No…I will always have it. Why do you ask?” (How could she forget that I’m treating it weekly? Did she think last week’s injection was the last treatment?)
She replied with, “You don’t act sick. You act normal. So I thought maybe it’s gone now.”
The sweetest words this mom could ever hear! There are so many things AS stops me from doing. So many minutes I cannot stand or sit with my children. But they don’t see that! She just sees a mom who is teaching, doing chores, hanging laundry, taking laundry out (I don’t take a huge basketful in one go. So I make multiple trips.) She doesn’t see the CAN’Ts. She sees a normal mom. Sometimes these invisible diseases are better. I don’t want her worrying. When the pain hits too hard, I give them something to do and I go lie down. I try not to burden them with knowledge that will worry.
And that is why I haven’t told any of the children the latest lung diagnosis. Interstitial lung disease isn’t good. To have fibrosis too is worse. The lungs are scarred and struggling. And the only way is down. I haven’t told them a thing.
I know of some angels who put university on the back burner when they hear their parents was not great. Truth is, an infection can kill me before I even get too bad. But I could also live 10 years on a slow decline. So why worry them? Why clip their wings if they want to fly far? (My daughter wants to go work overseas after she’s done her nursing degree.)
And so, I rejoice that to my angel who is a worrier by nature, I act normal. I pray I don’t need oxygen for many years to come. Then I will look normal. Invisible is a blessing when you don’t want to cause little ones to worry and fear.
And a smile, daily smiles, go a long way in reassuring little ones that life is normal.😊
It was written long ago yet it echoes thoughts I have TODAY!
I understand people mean well, but the one who is an expert on disease or condition or situation is the one suffering from it, or one who has cured or treated MANY with it.
Helping/curing one person with AS or ADHD or whatever doesn’t make even that person an authority. After all, there’s mild ADHD and there’s severe. There are different triggers. And what if they actually don’t have ADHD but just a very busy brain?
And so, I pray for my friend who doesn’t have a job, I don’t tell her what to do. I don’t know her area, I can’t tell her to go look for something else to do. I can’t tell her to sign up with an employment agency. Where are they? What opportunities would there be in her vicinity? Would I drive her to interviews? So, I sit and pray. And tell her that if another opportunity comes up for something different, that God open our eyes to it.
When my friend’s child is sick and the doctors get rid of one possible cause, I will WONDER to her if it’s not perhaps a different cause. But I won’t tell her how to treat him. What if it’s NOT the cause I think it is? Does she have the time to administer the treatment? Would he handle it? Or would it cause him discomfort? I pray with her that the doctors find the correct cause. No advice given.
But oh, the people who give advice without being asked…
I lament that we aren’t close to figuring out a cause for my daughter’s high heart rate problem. The answer, “ Well, at least” (Ooohhh. My friend and I hate it when someone comes up with an at least for a situation someone else is going through) “the tests are in hospital so gap cover and med aid will pay for them.”
Me, “We already did the tests out of hospital when we saw the urologist last month. And we don’t have gap cover.”
Now note. If I have medical aid, I obviously know about gap cover. There’s a REASON I don’t have it, a reason I’m not paying for it.
Response isn’t a, “Oh, she has other issues? Why was she seeing a urologist??” The response is, “We pay R200 a month for me and whoever and whoever.”
“Well, good for you!!” I think sarcastically.”
But, I just respond that we’ve done our maths and we are FINE as we are.
Would this person pay the “only” amount she is so sure is nothing for me because it’s nothing for her? Is she thinking I think gap cover costs much more than that? Is she thinking I’m careless for not having gap cover? I don’t know. But it definitely implies that I’m less than in some way. It’s the insistence when we gently decline that makes it clear that somehow the person thinks they know better. Like the people who keep insisting on an AS treatment or book I have to buy, or consultation I have to pay for ( One woman even wanted me to pay before the actual consultation even took place. WHAT!??) when they’ve never heard that the treatment actually helped maybe even 10 people.
Please don’t.
Nothing is “only.” Money is precious. I have six lovely children to clothe and feed. I have hectic health issues. I have co-payments for treatments. I have loved ones who need FOOD and about whom I feel terrible that I can’t do MORE. My R200 per month is for the destitute and desperate, not to perhaps cover some payment the medical aid I have might not cover.
God will provide. I’ve never not gone to hospital just because I don’t have gap cover. We had our twins at a hospital and via a doctor not in our network. Yet somehow we paid the hospital fee and two surgeons’ fees and the paediatrician’s. Without gap cover. And my poverty stricken people ate an extra serving of food with my R200.
Let’s not plan for others’ money. Let’s not assume they know less and that’s why they aren’t doing as we would.
Perhaps they even know more.
Like that their chronic fatigue and pain won’t allow them to travel there, or stand to make those meals, or find the ingredients for that amazing autoimmune recipe found using ingredients not local to us.
I just know that it’s well meaning but misguided. If we don’t ask, don’t tell.
Pray.
Help in practical ways.
How about you find the book, buy the ingredients, cook the meals and bring them over?
How about you offer to pay for the gap cover?
THAT is help. Unsolicited advice that implies superiority is not.
On a positive note. I am LOVED!
I am thankful for sisterhood that cares and asks how things are and randomly tells me, “I love you.”
I can do with many of THAT type of message. I won’t tire of THAT. 😊
Yes, my angel is killing us with her extreme anger and sadness. She feels deeply. Strongly. Loudly! I’ve lost my rest times, my video recording times because she has started not wanting to talk go out for a walk. And that means full out screaming and crying when they go outside. So I keep her so she can scream and throw herself around with me inside instead.
But, she is so loved. And she loves us. And there was just a bit of difference in her vocabulary. She always names what she wants- in general. Or rather, IF she speaks, it’s usually naming something she wants, or copying us. And even when she wants, she doesn’t even say the name half the time. But she used her words to communicate what she was doing! Not what she wanted.
Thankfully none of you ever miss it, but I used to share these kinds of positives on my WhatsApp status till I realised that some lady was being patronising and missing the reality. “See,” she’d say, “I told you she’d improve!”
Firstly, an increase in vocabulary doesn’t mean all the other traits of autism miraculously disappear. And my biggest challenge is not a lack of vocabulary. If she could say 1000 words but still wanted to eat and eat and eat, or still insisted on screaming when we can’t do or have the impossible thing she wants or stop her eating, would that REALLY be “progress?” IS it really an improvement? Not in what matters most.
Secondly, she has not started being consistent. She no longer refers to her dad as dinosaur. She says something and then stops saying it after a while and we wait months or years to hear it again. This is a momentary celebration. The ‘growing vocabulary’ moments are transitory. They pass. (For now) They are actually bittersweet because it teases us. It shows us she COULD say the words, she knows a concept or words, but just has a block or some neurological misfiring that doesn’t allow her to continue. It’s actually sad but in the moment, it’s also lovely.
So yes, she was playing with wooden blocks and when her dad came in from work, she told him, “Bocks!” As if to say, “Look, daddy. I’m playing with blocks!”
And that brings us to another challenge. She speaks with an American accent (Both twins learn better via the screen. And most kid friendly educational videos are by Americans😅 ) and she also has speech production problems. She mispronounces words. So sometimes we can’t tell if she’s saying waddle, or water. (Both with an American accent) If she says, “Penguin! Wadda wadda wadda” then we know. And it’s random. It’s not like she’s looking at a penguin when she says it. So it makes it hard to know what she is saying sometimes. Like bocks vs box!
But it’s there. One day, she will be able to discriminate better, I hope. I already know of auditory discrimination problems thanks to my eight year old having them. I see them in my very talkative four year old who says, “Huh” when she needs to process what I’ve just said. And it’s led to a difficult decision to no longer teach them a secondary language. They have BIG problems comprehending their main language. Building sentences, pronouncing…We have to work harder on that. They need to be able to understand what they are being told to do when they go to special school one day.
If my son doesn’t know the meaning of handsome in his primary language, why would I weigh his poor brain down with “Ndiyanxiba?”
Anyway! She told us a few times what she was playing with. She told us a few times what she was eating. And she loved us! We came in from a walk yesterday morning and she grabbed her dad and pulled him down to kiss her!!! Oh my word we were blown away! I missed it. (I was hiding the protein powder she is sure is for her!) I walked in as she was holding up her face for him to kiss her. (She hasn’t learnt to pucker her lips yet. So we know she wants a kiss because she tries to raise her chin towards us.) She’d not volunteered a kiss this year except once when she was super excited and happy and then gave me a kiss.❤️
Then she grabbed both our hands and chanted, “Two little monkeys jumping on the bed..” Not sure about being called monkeys!🤣🤣But I knew what she was trying to say, “I’m so happy to see you both!”
What did her twin come say when she spotted us, “You are back! We are family! It’s a family now!” Yep, they finish each other’s sentences.☺️
❤️❤️❤️❤️❤️
I love these children. With all their quirks! One day we will get an autism assessment done for my very talkative twin. And we will do OT as she has low muscle tone. But for now, we enjoy her funny sentence structure, the things she likes holding, the fact that she can’t eat unless she has a toy or something on the table next to her bowl, how she insists on a bib, and the routine she NEEDS or ELSE! And how she demands social stories from me. (We are told to tell our autistic children in advance what we are about to do next to reduce their anxiety.) She always asks, “After I eat then..?” Or “After I come back, then..?”
Some mothers hate questions all the time. I love them, especially from her twin. Having a child who can’t ask does that to you. I used to wish they could have an off switch after maybe 50 questions each day. But now, every word from every child is a blessing.
My dear friend asked me if it’s right for doctors to not be forthright with patients. To not tell it exactly like it is. I said no, it’s definitely not right, she is correct there. (I’d told her about an AS patient who suffered terribly after they had to basically undo her bent over spine and insert rods and pins to make it straight so no longer wanted to fix her permanently bent neck. The doctor even phoned to ask when she would have the surgery. She said no.
I don’t think the patient knows what I know. The cases of people who died because their bent necks crushed their tracheas and they were not able to breathe. I saw it in a dedication post by a daughter whose dad died like that. I suspect her doctor wants to save her from that possibility. But hasn’t told her so. Hasn’t told her what can happen as the AS progresses.)
After my lung functions tests, which hurt and led to much more discomfort than I’d ever felt after some of them, the doctor wasn’t happy with the fact that the lung diffusion test also had a bad result. (We have long known my lung capacity is low.) He asked about my iron, suggested that I have a full blood count done so he could check my iron and I told him I’d had a blood test two weeks before, requested by my rheumatologist.
He then phoned his receptionist and asked her to phone the pathologists and get my results as he needed to know my iron levels.
HE DIDN’T TELL ME WHY HE WANTED MY IRON LEVELS EXCEPT TO SAY THAT IF MY IRON IS LOW, IT WILL EXPLAIN MY POOR RESULT.
We waited. And waited. I didn’t even realise how significant it was that we didn’t just continue with the rest of the appointment, end it so I could leave and he just look at my results whenever they came through. I also didn’t get the significance when he said (after the results came in and he saw the official copy) a baseline CT scan would be good, just so later when damage is visible, we can track it…After a good 10 minutes of us just sitting there, waiting for LathCare to respond to the request, I got tired of awkwardly reading a book in front of him, and decided to go onto my PathCare app and show him from there. He saw that my iron was definitely not a reason. But didn’t say what exactly it was not a reason of. Didn’t say what lung diffusion is about.
So I assumed it meant that air was not going everywhere it should be going when I’m breathing in.
But that’s only a very high level understanding.
It means that oxygen is not passing properly from my lungs into my BLOOD. This is now not only about my lungs themselves, but about my whole body. Blood is life. If my blood doesn’t have oxygen properly, we have fatigue, weariness etc. And of course, it’s not good. Our bodies need oxygen.
Before the scan results came through, I’d been hoping that perhaps I had just been having a bad day that particular day when I went to do my lung function tests. After all, I’d done them twice before and I’d never had the pain and discomfort AFTER them that I had this time. Maybe something had been off that day.
But the scarring and bands (I read my CT scan report after the pulmonologist update me and told me to go in if I feel my lungs are deteriorating, instead of waiting for our next formal review and scan.) in my lungs put paid to that. There’s a physical reason why this test was so horrible this time. Why my lungs felt like they were struggling.
They are.
And so, it’s sad that I had to find out what the lung diffusion test is about via online websites on pulmonary fibrosis. I wish he had just been open. Yes, he did say we will intervene when you can’t sing and can’t walk and talk, but he didn’t tell me that intervention eventually stops working and you die. He didn’t tell me that yes, some do live long, but the average life expectancy after diagnosis is 3-5 years.
Knowing my days are shorter than hoped would help me take each one that passes without a crisis and make it even more special to me. I’ve been very grateful that despite having AS, I can still move my neck and twist my back. Things I’d have never been thankful for. If he’d made the reality more clear, I’d have been grateful even more that “today, my lung function hasn’t become so bad that I have had to ask to see the doctor.”
And besides the Enbrel suppressing my immunity, I’d make sure even more that I don’t get sick. Last year when I had a chest infection, my husband spent a night awake, very sure I was dying because I kept breathing like I was taking my last inhale. It was ‘rattly’ and the breaths were very far apart. Now we know it’s a possibility. An infection killed quite a few of the members of the fibrosis group I was in who weren’t yet inactive and on their death beds. They thought they still had time. Each time I’ve told my friends I felt like I was dying, it was more real than I thought. So grateful for LIFE.
But
Life is full of surprises. Lots of hardship. The first rheumatologist I saw thought the never ending AS pain and constant fatigue plus the children’s extreme needs were “too much, it’s not fair.” He asked, “Why is God allowing this?”
I don’t know why. But I do know that friends who care about every aspect, offering moral support, not unsolicited advice😉, make it easier to bear.
Bearing each others’ burdens. A theme of mine lately.
And I hope I never become so self focused that I stop caring about my friends’ hardships because I seemingly think mine are more important. I hope my people never stop telling me that I’m caring and kind for remembering them. There’s room in my brain for the problems of everyone who has made room in their minds for mine!❤️
I don’t want to become the person who out of the blue writes, “Hey A, how are you? I just wanted to check on you and hear how you are these days. My lungs are terrible, I can’t sleep at all and would you believe, my loc broke and it’s the third one this year to break off at the bottom and I’m in so much pain! The Enbrel is giving me horrible side effects and life really sucks. I have nobody to listen to my complaints so under the pretense of wanting to know how you are, I’ll really update you about how important I think my problems are so that you think this message was about checking on you when really, I won’t recall how you respond, i won’t internalize your response at all because I just wanted to get off my chest how miserable I think my life is so you pity me.”
Shoot me if I become that person.
When I want to check on someone, may I mean it. May I just write and ask. And wait for a response. Even when I’m using oxygen – in 100 years’ time!
Common Signs of Interstitial Lung Disease, Fibrosis That I Had
– chest infections that become very bad. One doctor even said I’d been so worried about the children’s sickness that I put myself last, endangering my life. She reminded me that a dead mom can’t nurse the children
– crackling when your doctor listens to your lungs via stethoscope
– doctor not hearing sounds of air in parts of your lungs
– being given asthma pumps but them not helping
– dry cough
– discomfort in lungs when lying flat. Less ability to breathe
– breathlessness
– wheezing
– tiredness. This one I have only thought was caused by AS fatigue / exhaustion
– chest x rays that are clear yet doctors think you have a problem with your lungs
If you have these and others that you can freely google, please rather see a pulmonologist instead of your beloved GP. My GP kept prescribing antibiotics even though chest X rays showed no sign of infection. She never suggested a specialist. I just figured that if antibiotics hadn’t ’put any air’ in the bottom of my lungs where she couldn’t hear any, a second round wouldn’t either. I needed someone with more expertise.
They said I should write a book 